As I was telling a friend about Ben’s university graduation, he said to me, “You won!”.
At first, I didn’t know what he meant. But then it hit me.
To reach this pinnacle, in his view, meant we had won. That we had beaten the “system”.
A system that always seemed against us. Where we had to fight for even the most basic of needs.
Having to justify every outcome, every dollar, and still getting denied.
Then appealing. Then moving up the chain of command to plead our case.
In the end, always expecting less than what Ben needed.
It was exhausting.
Our win, today, was getting the support Ben needed to transition to work. Without a fight.
Actually getting what we asked for was new territory for us. It seemed too easy. There must be a gotcha coming.
You see, when you start your life with “he may never walk, talk or go to school”, the idea of winning anything is so foreign. All your conversations are about survival and the things...
It was a silly question to ask a group of 300 high school students because the answer was obvious. With over 3 billion smartphone users worldwide, who doesn’t have one?
I was asked to give a presentation to these students on what it takes to build an inclusive world, and as I waited on stage to be introduced, I could see many of them trying to get one last text message sent.
The basis of what I told them about inclusion (naturally) centred on Ben’s achievements, which were a direct result of the inclusive community that supported him.
But since they didn’t know Ben, even though he was a graduate from the same high school, I was unsure what I could leave with them that would be relevant to their lives.
I opened with some background on our life with Ben, and the pain and struggles we constantly faced, especially in the early years.
I showed the film, “Including Me: Ben’s Story” (you can watch it here), which raised a few eyebrows.
And then I talked...
I know it’s May but I’m still thinking about this past winter, and how relatively stress-free it was (minus a leaky basement).
I can’t believe I’m saying this. I despise the winter season.
That’s probably because they have always been the toughest to get through for as long as I can remember … I guess, since Ben was born.
Even if I try to be super optimistic, thinking of “winter” still conjures up images of flu season, seasonal affective disorder, hibernations, shorter days, longer (colder) nights, and a suspension of all growing seasons ... at least here in the Northeast.
Winters are lonely, too. I can’t find any complimentary words for this unavoidable period other than, perhaps, it helps me to appreciate the other seasons more fully.
I remember being told that Ben’s first year of life would be the hardest to endure. And as we approached that first winter season, I was filled with an oppressive feeling of...
Four days after Ben was born, a specialist told us, “He may never walk, talk, or go to school!”
I wasn’t sure what he wanted me to do with that statement. I mean, how are you supposed to respond?
Maybe … “Oh, ok. Thanks for letting me know…”
If he was trying to convey a suffocating feeling of hopelessness, he did a fabulous job.
At the time, I remember asking one of my siblings (a physician) why such a cruel statement would be made. The answer was that doctors are trained to “hit” with the worst news first because parents will cling to even the slightest glimmer of hope.
I wasn’t clever enough to respond 26 years ago but looking back, I now see how ridiculous that statement was, too. Why does a doctor get to decide if you should have hope or not?
Here’s an idea. Rather than leave young parents (us) with the belief that their newborn child would essentially be a blob for the rest of his life, why not say something...
It was a simple enough question that Jan asked.
“September 2013” was the answer.
If I had been quick enough, I would have turned it into a Jeopardy skit:
Jan: “I’ll take Amazing Milestones for $400”.
Me: “The answer: ‘September 2013’”
Jan: “When did Ben start university?”
When Ben was in high school, I remember being asked repeatedly what I thought Ben would be doing once he finished. At the time, I didn’t have a good answer. The options were few.
The fact that he doesn’t walk or talk on his own, and needs a full time assistant, meant getting a job was out of the question.
On the other hand, sitting at home and doing nothing was also a non-starter.
The only possibility that made sense was for Ben to stay in school and continue to learn. It’s what he enjoyed doing. So we looked at community college and university programmes.
That, also, was a non-starter since he didn’t have the academic...
You’d think after 26 years of living with this stuff I would have found a way for it not to bother me. But it still takes me off my game every now and then.
I guess it’s the psychological damage that comes with discovering that your child, or loved one (or yourself) has a disability or serious health condition.
And the energy it takes to live in a world where you have to fight for everything.
And the worry and uncertainty of what tomorrow will bring.
For me, it’s the unforgettable “he may never walk, talk or go to school”, knife-through-the-heart statement, and everything that goes with it.
Even though none of those things really came true for Ben.
Even though he is just one exam away from graduating … from university!
With 100% certainty, I can tell you that the cure for this funk is to shift focus from what’s lacking (because we will ALWAYS lack something) to what IS.
It's not easy to do. Sometimes you want to wallow in self-pity. But...
“There’s nothing anyone can do to help you!”
That was more or less the message we were given when Ben arrived in our lives, having been born with severe, complex disabilities.
No one actually said those words, of course, but that was what we were left with at almost every turn.
The conversations were mainly focused on all of Ben’s “problems” and how there really wasn’t a fix to those problems.
It was easy to get caught up in all that negativity, to believe that’s all there was. For a long time, we had no idea what path to follow, or if a path existed at all.
With so few giving us much hope, we relied on brute force to get things done and help Ben succeed.
After a few years of that exhausting pace, where it was just me and Jan against the world, so-to-speak, we realized we needed help. We couldn’t do this all our own.
It wasn’t good for our health.
It wasn’t good for our relationship.
And our kids were certainly not...
"Sir, if you'll not be needing me, I'll close down for a while."
Do you know who spoke that line? In what movie? And in what scene?
Send me an email ([email protected]) with the correct answers to all 3 parts … and I’ll give you a free copy of our deluxe edition audio book !!
Ok, so how many times a week do you just “close down for a while”?
You know, just un-plug, relax, re-charge and stop micromanaging your life or your child’s life?
And when you do close down, what is it that you do? Do you even know how to relax and calm your mind?
If your child or loved one has a complex medical condition or disability, I don’t have to tell you about all the balls you’re juggling … all the time. And how closing down for even an hour is not possible most days.
What I need to tell you is that sometimes … sometimes you have to force yourself to close down, which sounds like an oxymoron – forced relaxation!
Sometimes you just...
So you’ve just hired a caregiver ...
Or maybe you've had someone for a while ...
Or you know someone who relies on a caregiver ...
How do you keep them bringing their best?
Well, consider this obvious fact. Everyone loves to be praised and told they’re doing a good job.
I think that goes without saying.
Some of us might feel a bit uncomfortable when we get a compliment, not really knowing the right thing to say. But we love receiving them, nonetheless.
The problem is that many employers are not really good at giving compliments and pointing out when things go right. And don't forget, you (or your friend) is an employer in this situation.
The tendency is to expect that people will do a good job which means you wind up ignoring those things and focus only on the gaps in their work performance.
If you’ve ever read any of Ken Blanchard’s writings, you’ll know what I’m talking about.
One of his books is rather brilliant. It’s...
“Hey, Gladys! Get me a beer!”
A friend asked me what would I do if someone in my extended family – let’s call him Uncle Ralph – talked that way to Ben’s caregiver, Gladys.
I was stumped for a moment, since that has never happened.
But it was a good question and highlighted the importance of knowing where the line should be drawn between keeping the relationship with your caregiver friendly but also professional.
Of course, “get me a beer” is way offside regardless of where that line might be.
So, first things first. At the end of the day, you need to remember that Gladys is an employee of yours even if you’re not directly responsible for paying her.
This sets up the dynamic of an employer/employee relationship as well as the responsibilities and respectful behaviours that go along with it.
Hopefully, it’s a wonderful relationship where Gladys loves her job, she actually DOES a wonderful job, and your child or...